5. Get ready for bed by herself, in 10 minutes. CHECK! When she is really motivated, she can do it. It takes focus and she has to be in the right mood to be efficient.

6. Leave the house, with her own backpack on, and get on the school bus while we watch. CHECK! Well, I'm giving it a check. She left the house, went down the stone steps (with her backpack on), to the bus. She needs a small boost getting on that first step onto the bus.

7. Stretch with the Dynasplint 3x week. Nope. We are using it more than we used to, mostly b/c we are looking at stretching options because she is so tight. We need more stretching, or something, b/c spasticity/contracture is a problem--especially on her right foot.

8. Do CME exercises, or similar type balance play on playgrounds, 3x/week. Nope. Granted, this was ambitious. There just wasn't time to get this going.

9. TAKE SWIM LESSONS UGH this is my biggest disappointment in myself regarding this list. I just couldn't fit it in the schedule. I don't know how to make this more of a priority. Elena wants this.

11. Sleep in a tent! CHECK! We got a new tent for Christmas, so hopefully we won't get drenched next time.

12. Take the kids to the movies. Nope. We've had some movie nights at home, but we haven't been to the theater yet.

Elena's own goals:

1. Climb the rock wall at PT by herself. CHECK!
2. Take piano or voice lessons. CHECK! (piano)
3. Have an Easter Egg Hunt outside the house. Nope. It rained on Easter. We did have hunts inside, though.
4. Spend time in the snow--sledding and skiing. CHECK!

Bonus Vivian goals:

1. Roller skate CHECK!
2. Make her own toast Well, we tried. She ended up almost sticking her hand right in the hot toaster, so we'll have to try that again sometime.
3. Play frisbee with a dog (E likes the addition of a dog too) Untested.
4. Write a letter (she can write her name) She wrote a note to me, the first day after I left work, wishing me a great day off. CHECK.

And goals for me:

1. Spend more time with grown-ups. CHECK! Not as much as i'd like, but yes.
2. Continue to do something after the kids go to bed. CHECK. It's much better now that I am home.
3. Run/bike some races around town. Well, I did some with Elena. Half-check.
4. Paint the foyer of the house. No, but I did paint the playroom, which is probably better.
5. Learn how to use my new sewing machine! CHECK! Halloween!
6. Find a babysitter. Nope. We still need to do this one.

Overall, I think we did a pretty good job on these. Being home is going to change a lot of things, one being structuring homework so we can fit in more activities--or less of them. Elena is having some school challenges, which brings academics to the forefront, competing with motor skills--it's hard to find the time (especially when her everyday activities take her longer to accomplish than her peers). I'm not sure how well we balance school/home/exercise/therapy/rest/down time, but I do know that me being home will be an improvement in a lot of these areas.

Preparing, celebrating, and cleaning up from our Christmas celebration has taken most of my time and energy lately. So, here is the nutshell version.

First of all, preparing for Christmas was extra-special because I had more time to do it. Despite a decade of trying, I finally got the outside of the house lit this year.

Wood Pile reindeer

Night Lights

We made three (!) kinds of Christmas cookies. I even helped volunteer at Elena's school to help her class make ginger snaps!

Viv and I helped E's class at school

We all went to a free (!) Christmas concert by the Municipal Band. It was great! The kids even knew some of the songs and sang along. The girls went to a work holiday party and got to see Santa! Jason and I went to our friends the H's holiday party--with only grown-ups and it was fabulous! Vivian had her preschool Christmas pageant. They even played handbells to Joy To The World. Viv was fantastic!

It was dark inside. You get the idea, Viv was excited!

There was plenty of seasonal music around the house, and lots of watching our video of The Nutcracker (Baryshnikov/Kirkland version). As a surprise, I took the girls to the theater to see it live!

On our way to the Warner

After the show--girls in the city!

We had both sets of grandparents come to our house. It was wonderful to spend time with family! The girls enjoyed their gifts and their company. Elena has been working hard on her Christmas piece, and she played "Jingle Bells" on the piano for everyone!

We actually had cards ordered (Elena did the artwork!)--but they arrived later than expected. The good news is the company waived the charge, the bad news is they will be sent late. I figured I'll consider it a win if we get them out before February.

I know this post is up late--there is a lot more to write about, but I don't want to get any further behind than right now. Merry Christmas, Happy Holidays, Happy Solstice, Seasons Greetings to everyone!

Tuesday, December 10, 2013

I could write more eloquently about tonight, but I'm so tired, and it's late.

The kids were off school today (snow day, but mostly dreary sleet). The girls were pretty good all day. E especially (she's been a little ornery lately).

We had a plan to decorate our Christmas tree tonight. I didn't want tonight to be a late night for the kids going to bed, but dinner ran late and the kids needed a bath. Anyway, we started to trim the tree--normally after a bath, we don't put E's shoes back on. But we had to, b/c otherwise trimming the tree would have been really really difficult.

So we did.

And we all put on ornaments.

All four of us.

At the same time.

Moving around, occasionally bumping (very infrequent), but I was very aware of how much stopping and starting it takes.

And still it went, for close to a half an hour, all four of us trimming the tree. It still feels like a dream.

We never held Elena's hand, or picked her up, or moved an obstacle out of her way.

Sounds like an ordinary way to decorate a Christmas tree, right? Not for us...tonight was extraordinary. I'm teary just thinking about it...I want to save it forever.

Friday, December 6, 2013

Hot and Cold
The weather has been just starting to match the season. I decided to take the girls out a month (?) ago (this is a catchall update) before the leaves fell off the trees--it was beautiful out, but freezing!!

Beautiful Fall

Running

Hot Cocoa

The New Playroom

When Elena was learning to walk, she fell "like a tree" all the time. We decided we needed a "crash room"--so we emptied our dining room, bought the thickest carpet we could find (and put the thickest pad under it), removed any furniture, padded any and all "corners", and gated the sides. That was our arena before Elena could move about the house safely (roughly, two years). Now, our entire main floor is littered with kid stuff--Elena has trouble carrying lots of things, so we never stressed cleaning up after herself--and we didn't really stress it with Vivian either. Now that Elena can navigate the entire house on her own, I decided to move the playroom to the basement and reclaim our dining room (eventually).

I've been working for the last month on the new playroom--cleaning, painting, putting together furniture, etc. I still need two chairs for the table. Pictures when they arrive!

Rainy Indoor Day (first days as a stay-at-home Mom!)

It was such a yucky day...so we made the most of it, gross-motor style. Here are some highlights of our obstacle courses (Vivian not shown).

More Riding at Fairhunt, with Bonus Vivian!

Elena's riding is improving. Some of the best cues Susan has given Elena have been referring to her pelvis as "a bowl" and how she doesn't want to "tip the bowl" (less lordotic posture). Elena is starting to understand what a pelvic tilt means, and this is one (out of two) exercises that maintain that awareness. She is also posting better. Starlight a.k.a. "Teacup" is a good pony, but she is very old and will retire soon.

Just like her big sister

Roller Skating!

The local recreation center in town offers free roller skating every Friday night and Sunday evening. It's wonderful--the staff are so friendly, encouraging, and nice; the other kids (honestly, all of them) have been super nice. It's full of people falling, not just Elena, which is a refreshing change.

Granted, Elena has a harder time on skates than anyone else I see there. Still, she enjoys it, and it's a new and different balance challenge--and that's always good, in my opinion. Elena skates best with two adults (one on each side, normally Jason and I) or one adult if she's doing really well. She also wears a harness I bought a long time ago (thinking it might help with skiing or bike riding) that has a handle near her back.

We have three goals when E is skating: 1) for her to keep her head up (mainly to keep her butt in line as much as possible), 2) to try to put all four wheels on her right foot on the floor (this is rarely successful) and 3) to keep her feet moving (otherwise she stays on her left foot too long). I think she is doing beautifully, and she improves every time. Elena is discouraged when she sees Vivian, now skating by herself; we try to be happy for everyone, and just have fun out there.

We had a really great experience when a little gem of a girl Elena's age skated right up to her as I was lacing up her skates, and she introduced herself and asked about Elena's braces. Then she said she doesn't like wearing her brace either. I didn't see one; she said she wears hers all the time when she is not exercising. I think she was talking about a back brace for scoliosis (I didn't get that far in the conversation, as she and Elena were talking). It was nice for E to realize other people wear braces, even if it isn't obvious.

Sunday, November 10, 2013

I'm not sure why, but I hesitate to call myself a stay-at-home mom. But I am (now). I do miss the idea of having a job out of the home--but I don't miss work. AT ALL.

I miss the facade of having it all--a job I love, and my well-taken-care-of family at home. In reality, I didn't have either. I just didn't realize it.

It's amazing what you'll tolerate, a little at a time. That's how it was at work. And at home, I'm crushing it. Cooking, cleaning, being active with the kids, getting their homework done, little fun things, you name it. Both Elena and Vivian tell me several times daily how glad they are that I am home. If that's not validation enough, I have a bathroom that hasn't shined for a year (don't judge me) that is now spotless and my favorite room in the house. The house TLC is coming along slowly, three hours at a time (while both kids are in school) and it's going great.

You don't have to tell me that stay-at-home-moms work. Any parent already knows this, working or not. In my case, I found out the hard way that my home life suffers plenty when my work life is (was) overloaded. So far...my sabbatical is a huge win. Physically--no more constipation issues, I sleep much better, and my contacts don't bother me any more (no I'm not making this up). Mentally, I still juggle a lot--but it's things I WANT to do, which is relatively new. Emotionally, I feel better about being there for the kids. Elena and Vivian have been hugely appreciative--something I would never have expected from kids so young. Vivian has playmates coming to the house, which is completely new. Elena is planning playdates after school. Everyone is going to bed better than before.

Life is good. I'll have to put up pictures of our recent adventures--roller skating, cooking, making the basement a playroom, art projects...eventually. Now, it's time to rest.

Tuesday, November 5, 2013

Amidst all the Halloween drama, I was also planning Vivian's birthday party. She chose her theme as "Witchy Party", so we decided on a dress-as-witchy-as-possible party, with some songs, broom games, and making a Witch's Brew!

***more pictures will be added as I get permission from parents to post***

We started off with the kids learning part of a song--Witches' Brew by Hap Palmer. It was a great way to regroup the kids (using the chant from the song) and it kept the theme going.

Broom sweep game

I had decided to make a huge cauldron (out of cardboard, duct tape, black paint, a few trash bags for the liner--and a good amount of dry ice!) and have the kids add ingredients as we made the brew. I had tubes containing ingredients (some same, some different) in a three decorated boxes. I divided the kids into three groups and had them search their tubes to find the next ingredient--the brave ones stepped up to add it to the pot.

I help Elena add "eye of newt"

Adding "crushed bones"

All but a few ingredients were common kitchen goods, with different names. "Skin from a witch's nose" (bran flakes), "eye of newt" (cous cous with a black dot painted on each one), "crushed bones" (flour), "clay from the lost red temple" (crushed up red chewable vitamin), etc. There was also purple pixie dust (glitter) and a fallen rainbow (nontoxic crayon shavings). My personal favorite was "a dash of invisibility" (an empty tube). The kids were confused.

"What does it look like?" one child asked.

"I don't know, it's invisible!" I answered.

Vivian finally found an empty tube. "Is this it?"

I nodded.

"How much do I add?"

"Well, " I told her, "you don't want to add to much!"

Her action was priceless. She cautiously approached the cauldron, and tipped it just a smidge. I told her to put a little more in, and she shook it a bit. The kids were spellbound.

Vivian making sure the "Ghost Juice" was "rat-infused"

After all the ingredients were added, we danced around the cauldron singing our silly song. Then I removed the top from the secret pot inside (containing mostly Grape Fanta--some of the hot water and frost gatorade did creep in the pot, as well as a few crayon shavings) and ladled out some to taste. No one was interested in trying any with me, until I told them how delicious it was. Then everyone had some (even some parents). I warned the kids to take it easy, as the brew might have too much invisibility in it.

Then the pizza arrived, and the kids played around the yard. We sang to Vivian, and had birthday cupcakes. I asked the kids what power they enjoyed most from the Brew, and it ranged from "super speed" to "invisibility" to "sparkle power" to my own, "extreme tiredness".

Huge thanks to Vivian's friends, Nana and PopPop, and especially Adam at asmphotography for the great pictures (you can find him and more of his work here) for coming out to celebrate Vivian!

My Dearest Vivian,

When you woke up the morning of your 5th birthday, you jumped in to show me how short your pajama sleeves had become overnight because you "turned into a five-year old". You are inquisitive, hilarious, expressive, and emotional. You're our little ball of entropy. You love purple, dancing, being loud, and turning things into a competition--even though you argue it isn't. You love, support, and look up to your big sister. You love to catch and throw kisses, read, cuddle, and do our Fancy Five handshake.

I joke that I want you to "stop growing". I'd be lying if I wish, only a little, this wasn't true. If I could put this time in a bottle and savor it forever, I would. You are a joy.

Thursday, October 31, 2013

Well, Halloween this year was one crazy adventure after another. Jason ended up having an overseas trip for work; his parents graciously offered to come down and help out. This was fantastic, obviously b/c the kids love it when Nana and PopPop visit, but this was also my last week at my job and I had a lot projects to try to finish up. Oh, and start (and finish) the girls' halloween costumes.

Carving pumpkins!

Jack-O-Lantern Girls

I might have figured out how to use my sewing machine on my own, but never in enough time to finish the costumes for Halloween. Vivian chose to be a "real bat" this year--a fuzzy body, big wings, an upturned nose and big ears. The nose was the only thing we didn't deliver. Elena decided to be a bat too, which worked great with her crutches (it's a little hard to see in these pictures). Right as I was finishing some ties for Elena's crutches, I put my needle down and our cat Temple ATE IT. Nana and PopPop spent the evening at the emergency vet (bless their hearts) while I gave out candy and Jason took the girls trick-or-treating.

Viv shows off her wings

E's wings are tied to her crutches

The girls were out for a little over an hour, walked at least two miles, and got a nice load of candy. E was limping a little--that might be a strong word for it--she was walking funny, I imagine it was spasticity compensating for fatigue. Still, she was in a great mood. Temple had her needle removed and was home the next morning. Huge thanks to Nana and PopPop for saving Halloween!

Tuesday, October 29, 2013

Huge thanks to everyone who gave me encouragement/commented about my last days here at work. I feel better every day about leaving that stress behind. I figure I might miss the science professional in me later, but I imagine it will take a while (minimum 6 months?)--anyway, I've been thinking about the weather getting colder, activities for the kids, managing spasticity, etc.

Starting NEXT WEEK (!) I will have more time, I am brainstorming of ideas for the cooler weather. I promise, I am not going crazy/trying to fill up my time--but I would like to prepare for Elena's tightness in cooler/cold weather, if I can. Here are some ideas I have planned--please, PLEASE leave a comment if you have suggestions! Now's the time!

In no particular order:

1. Finish the playroom. We sacrificed our beautiful dining room as the "crash room"--super thick carpet, padded anything with corners, and baby-gated the whole space while Elena was learning to walk. It was a GREAT decision. Once she was more stable on her feet, it became the playroom. There are toys everywhere, too many to count. The playroom will be a featured playspace ("less is more" playing concept, lots of sensory input at Elena's suggestion) with storage features for toys not in use. I'm hoping to get our dining room back in order by the summer at the earliest. Which means

2. Our only table will become a craftspace in the kitchen. It's a great idea--especially now that my sewing machine is out finishing up Halloween costumes.

3. I want to make more Crutch Pockets for Elena. It's wonderful for winter! I want to change the shape/fastener a bit so Elena can take them off/put them on without assistance.

4. Elena needs a belt. I have some ideas for fasteners (not velcro, it will ruin some of her clothes and if she doesn't get it right, will scratch). Her pants are either to loose, or too short. I'm thinking a snap-clasp or seat-belt buckle type thing. I'm not sure yet.

5. Anyone have rice/seed packs for hand/neck warmers? Where you heat them up in the microwave and they stay warm for a while? I think that would be good for some sort of thing to warm up feet. Slippers don't stay on E's feet all that well. I'm still thinking this one through.

6. Stretching/spasticity ideas: One time I warmed up flat marbles and put them between Elena's toes. She LOVED it--it was weird, but a good 'wake up toes' stretch. Maybe I could get some sort of mushy tension ball and she could try to push it around with her feet. Foot/leg massages, obviously.

7. I want to find some sort of beverage container that's spill-proof, unbreakable, that has a relatively small volume that's EASY TO CLEAN in the DISHWASHER for warm beverages (tea, hot cocoa) for the kids. Any suggestions?

8. I need to find winter boots. Lightweight, big, open-tongue (we liked the Circo boots from Target, but I haven't seen any lately) to accommodate her braces. I love the look of some of the boots out there--but they weigh A TON, and in deep snow (or any snow, actually) Elena just won't be able to move. I'll also get some crutch tips with traction (for snow/ice) that are only for sledding/skiing (b/c they'll tear up indoor surfaces). If we do a little weight training, E will be ready for movement in the snow (it's amazing how much that makes a difference).

9. Neckwarmers for the kids. E loves scarves, but I'm afraid they'll be a choke hazard if she trips. I sense another sewing project.

10. The kids love decorating! We start Christmas decorating right after Thanksgiving. This year we will do lights! Vivian is getting the idea of calendars, and she can read, so that gives me some inspiration.

11. Lots of cooking, of course! Doodle friends, is there any interest in a little recipe share between our kids? They all love mail...maybe your child can pick one of their favorite recipes, tell why they love it so much, and send it along with a picture to another blog friend?

And NO I do not plan on doing all of this immediately (or, maybe even ever). I do plan on having a day or two of rest. This is just fun brainstorming....

Wednesday, October 23, 2013

Parent-Teacher conference: Elena is doing well in 3rd grade. I feel like...well, it always takes longer for Elena to learn anything--gross motor, fine motor, speech, vision--and academics seem to be the same way. And that's okay. Quite frankly, we are thrilled that Elena is mainstreamed in school and is "on grade level". We have a private math tutor, which is going quite well--without him, Jason and I feel strongly that she'd fall behind (or be more behind than she is). It's a little weird...it takes longer for Elena to get a concept (borrowing and carrying numbers, for example) but once she gets it, she gets it. But it seems to be that way with almost anything. E just takes more effort, I guess. We do most of this privately, b/c I feel strongly that the teacher/aides are busy with lots of kids (not just mine) and that I need to be conscious that others might need more attention in the classroom. It is a struggle, but the payoff is worth it. Absolutely. She loves her class. I love her school. I love her aide, and how receptive they are to my concerns. We listen and communicate. I am pleased with her educational team, and I am proud of E. I am also tired, b/c this takes a lot of effort.

Vivian is doing well in preschool. She is reading (has been for a while), and Jason and I feel like she might not be as academically challenged as she should be. BUT, she is still learning how to be patient, take turns, not interrupt, etc. so her preschool environment is great for that. She enjoys her classmates, and is excited to tell me about her day. Viv is a gem of a girl. And she really knows how to encourage and enrage her sister. Typical little sister.

I am TIRED. I have 7 more days at my job before my resignation date; and I have to confess, I am ready. A large part of me is disappointed in myself for not making it work (work-life balance), and the other is proud of me for finally realizing that "doing it all" isn't making anyone happy. Elena and Vivian can't WAIT for me to leave work (even though they'll still be at school). Our health benefits will change, but we are prepared for it. Jason is supportive. Our woefully neglected house will get some TLC. I will be more present for the kids, for their education, for their enrichment, for Jason, and simultaneously, have some time for myself. It still sounds like a fantasy. I hope it isn't.

I have a lot to do before Halloween and Vivian's birthday. Lots is going on in my head (some of it is even on paper!) but I am way, way WAY behind. Mostly I'm busy trying to wrap things up at work and trying not to stress out about other things. If it's important, it'll get done. That's the modus operandi around here lately.

Piano Lessons: Elena has been asking for piano and voice lessons for MONTHS. Jason took the initiative and found her a great teacher close to home. E's piano lessons not only give her confidence and help her enjoy something new, but it helps with her fine motor skills (obviously), core strength, sitting posture, math skills, and she LOVES IT. It is nearly impossible for her to practice every day (there simply isn't enough time between school and bedtime) but we'll stick with it as long as she is enjoying herself.

Spasticity Update: E is on her toes more. I feel like she looks bigger lately...that could be part of it, but regardless of growth, she is on her toes more than she used to be. I hope to wait for any lengthening procedures until she is 10 years old--I hope we can make it. I'm also entertaining different doctors--I'm just not sure our orthopaedic team here is passionate about helping Elena to find her true potential. Second (or third) opinions are always a great idea, so I'm hoping to make some appointments in Summer 2014.

Thursday, October 17, 2013

A few weeks ago we headed out to Belvedere Plantation--I've just been too busy to write about it. It was AWESOME, as usual. We love coming here. The changes in both Elena and Vivian are obvious, tangible, and beautifully heartwarming.

The day was gorgeous--not too hot, with leaves just starting to change color.

Girls with the Pumpkin Princess

Again, this was a situation where we decided NOT to bring any mobility devices save Elena's crutches. The plantation is expansive, and the motor skill activities are diverse. We thought Elena might get tired--but she is too large for a stroller, too large for a wagon, and her wheelchair isn't a good fit here either. We had confidence she would do well, given our experiences at Busch Gardens and Disney earlier this year.

Sisters at the Plantation

Our first stop was the Jumping Pillow. We were there early, so it wasn't too crowded. Elena has made a lot of progress jumping on the trampoline this year, but this is a curved surface, so it's tougher. Elena asked for my hand, so we decided to jump together.

Walking on air

Jumping together

Barrel Train. Elena said she's too grown up for it. (Probably true)

There is a big underground slide, where you ride on a burlap sack. In the past, both girls have ridden with a parent. This year, Vivian was adamant she would do it herself. It was fantastic, watching her run and carry her burlap, and laugh and smile as she ran to do it again.

Miss Independent

The hill going up to the slide is not trivial; it's quite steep, rocky, and then there's the sack to carry. Elena was firm that she didn't want to be carried. She tried to carry the sack, but it was too long and cumbersome--so Jason carried it, with Elena walking to the top. She rode with a parent, or by herself.

That's E in the middle

Riding with Mom

Fam shot on the quad slide

The plantation bought new tractor bikes; Elena tried these last year, and had a lot of trouble staying on the pedals, and the bikes were rickety. This year, Vivian and Elena needed minimal help! That's a HUGE change, especially for E!

Burnin' rubber

I am so psyched E is doing it herself!

The Hay Barn was also a huge hit. Both kids love the ropeswing, and E didn't slip as much while walking in the hay.

Swing E

Swing Viv

We cheered for our favorite pig during the pig races, and saw baby goats, and all sorts of farm animals. Both kids LOVED the zipline, it might be their favorite attraction (besides the pumpkins). Elena doesn't have quite enough momentum to make it across on her own--the staff got a lot of exercise helping the kids. Vivian got a lot of help too--my bets are, next year they'll be on their own.

Viv gets a push

I let E have a piggyback after all her ziplining

Pretty Pumpkin Head

Me

Viv is catching up to Elena

Sunflowers

We had to skip the corn maze this year. We were hoping to do it, but we were running out of time and the kids were both running out of energy. We'll probably hit another one closer to home before the season is through.

Hayride Sisters

Scouring the pumpkin patch for a perfect pumpkin is a lot of work. Every year, Elena gets caught in the vines and trips, or gets stuck--her best distance in the pumpkin patch on her own was approximately 3 feet. Not this year. She navigated the entire patch on her own, using one or two crutches. She didn't carry her pumpkin (she wanted to)--but neither did Vivian, they were just too heavy and awkward. Jason did carry our entire pumpkin haul for a discount at checkout (FIND THAT PICTURE), which was pretty impressive!

Monday, October 7, 2013

I don't post much about myself here. But this topic has been on my mind--constantly--since this summer (if not before that).

So, here goes nothing.

I work full-time. I have since before the kids were born. Overall, my job is pretty good--great benefits (even though they are cutting health coverage a bit, it's still pretty good), and I like the work (I guess you could call me a scientist). I also work seven days a week. Not full days on weekends--but in general, I have to be there every day when projects are being done, which is (in general) all year except Christmas, Thanksgiving, and a vacation here and there (planned well in advance). In return, I have a pretty flexible schedule that allows me to be at E's therapy appointments and doctor's visits, and maybe a field trip here and there for E or Vivian.

I sort of missed writing about the child care transition, even though it was pretty major. Since Vivian is in preschool now, we encouraged our Fantastic Nanny Annette to find a new job (which she did), and I have shifted my hours so that I am home for the kids after school. We all knew this would happen sometime...we hated to say goodbye to Annette (although the kids will still see here every now and then) but it was the best choice for everyone.

And I am exhausted. BUT--I love Love LOVE being there when the kids are out of school. Sure, some days they are just contrary (who isn't?) but I feel like life is more complete. The 5:00-7:30 pm "crunch time" isn't as severe, which is a really big relief. I am exhausted, though.

So.

It seems my employer and I may be at an impasse, in terms of the hours I work--because they do NOT like this change. I understand their point. I think they understand mine.

I'd like to keep working, as long as I can be here for the kids. That's the work-life balance I want. The balance I deserve, and the balance that I need.

I feel like actually having that--"Work Life Balance" is a joke. I'm not sure it exists.

Tuesday, September 17, 2013

E and I had the opportunity to take part in the Pepsi10K/2mile event for Special Olympics. We chose the 2 mile walk option, with the intention of running as much of it as possible. Elena and I were excited, but I knew 2 miles would be a lot for her.

It was crowded. All sorts of people--fast runners, slower runners, walkers, families. We felt very welcome. Vivian and Jason were going to be our cheerleaders!

Ready to go

My runner girl

E started running right from the start. She looked GREAT, and we hung with the pack (of walkers) for a while. Elena's pace started to ease up at about 3/4 mile, when she started to walk more. No biggie.

We had tons of encouragement along the way. It was a down-and-back course (the runners intially went another way, but caught up to us by the time Elena started to walk more) and the "final stretch" runners cheered and yelled Elena's name. She beamed each time. It was pretty awesome.

PIC OF MOM AND E

Elena got really tired after rounding the first mile. We were the last of the walkers (which we don't mind) and E said that she "couldn't feel her hands". WHAT? She's never complained about that before. I understand that the pressure of her loftstrands could hurt, but she's walked a lot more than this and never mentioned it. I asked if she wanted to sit on my knee and rest, she adamantly refused. So I asked if we could hold hands instead of her using her crutches, which she obliged--for about two minutes. She asked for her crutches back, and we went walking on our way. I offered to carry her, or have her rest, and she would not accept that kind of help.

She found a new burst of energy when Jason and Vivian found us along the route and walked with us. Then, we rounded the last corner, and E finished the last two hundred feet or so at a run. It was pretty great! Then, it was off to enjoy some food, running company, and some playground swingtime.

PIC

I worry/wonder about her hands on her crutches. I understand it can be uncomfortable, but she didn't complain at Disney, or at Busch Gardens, or on long walks or hikes. Maybe she was leaning a lot because she wanted to go fast? We have little neoprene "sleeves" that offer some squishy padding for her hands, but Elena doesn't like them. Maybe we'll have to look into something else like that for her running events, if she chooses to do more (there are two more on the schedule for 2013).

Monday, September 9, 2013

Elena was making progress becoming an independent pony rider at the end of her time with our Hippotherapy program. Brenda, our therapist, recommended that we consider another riding place, which she'd be happy to pre-approve for us (that's great, b/c we live in horse country and I don't know a thing about horses or what would best suit Elena's needs). The reason was that Brenda thought that Elena could take typical riding lessons (I consider them "riding-lite"), and that was not her specialty. Our last hippotherapy session was July.

We now go to Fairhunt Farm to ride. It's a lovely place, and Susan is very patient. Elena rides Starlight, nicknamed "Teacup" because her hooves are so tiny. Teacup is an tiny old mare who is well trained and very patient. Elena loves her.

Elena is learning horsemanship, so she helps care for Teacup before and after riding. I didn't see much of a physical gain in it as much as relationship-building with the pony--but I was wrong. One time, after riding (when Elena typically has "jelly legs") she was brushing Teacup with very straight legs and not leaning on her at all--that almost never happens. Teacup even moved towards E a little, which would have sent E flying if she was leaning on her--but it was fine b/c Elena was in control, in her own space. That's pretty huge!

"Painting" Teacup's hooves to prevent cracks

Saddling up

I am typically a side walker. I have to confess that when I see E in the saddle, I'm very proud of her--and afraid half the time she's going to fall off. Not b/c she's going too fast, but because she's expected to do so much more balancing than she's used to, and since our riding time is after school, she is quite tired. To me, E seems to have a hard time focusing on Susan's instruction right now. I think that will change--she's still getting used to her school schedule, for one. Elena also originally arrived at Fairhunt feeling pretty confident of her skills, and I believe is realizing she has a whole lot to learn. Maybe it's a bit overwhelming, and that contributes to the lack of focus sometimes? We'll see.

Walkin'

Side View

Trot Action, #1

Trot Action, #2

Elena loves to talk to Susan and enjoys steering and walking. She leans forward a lot right now when executing movements, but she is getting better at her posture and that awareness is exactly what I want for her. I think that Elena's riding will improve quickly. Susan's voice is gentle and she is a different type of instructor--I worry that my presence of being a helper isn't the best fit. I try to be quiet and defer to Susan as much as possible.

Vivian and Leonard

Vivian comes to Fairhunt with us, of course. She really wants to ride a pony, but somewhere in her almost 5-yr old mind she knows this is Elena's lesson. She is allowed to explore the farm, including goats, barn cats, dogs, and chickens. She likes to pretend she's a pony and run around the ring. She occasionally gets to brush and even ride Teacup for a short while--she's so happy to do what her big sister does, it's adorable! (Hopefully I'll get a good pic of Viv on Teacup soon!)

Recent Doodle Updates

INSTAGRAM

Search This Blog

Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.